I Am a Pre-Existing Condition

To those Christians who support the repeal of the Affordable Care Act (ACA):

Perhaps you have never been denied health insurance for a pre-existing medical condition, and you think you don’t know anyone who has, which is why you support the repeal of the ACA, including coverage for pre-existing conditions.

Well, guess what? If you know me—as your daughter, sister, cousin, niece, or friend—then you know someone who was born with a pre-existing condition. I have a rare genetic disease called X-linked Hypophosphatemia (XLH). Around 15,000 people in the United States have this disease. Since it’s genetic, it is passed down by a parent or it can also occur spontaneously. I’m a spontaneous case. Either way, I suppose you can blame my parents because, after all, they created me.

I’ve been denied health insurance for my genetic disease. Even when doctors knew very little about XLH (called Vitamin-D Resistant Rickets back then), the insurance companies thought I’d be a liability. My first job after college, in 1982, was with a small company with less than ten employees and they offered health insurance to full-time employees. The Republican owner was determined to find a health insurance plan that would include me, since the first few insurance companies he tried refused to put me on the policy. When he found a company that would cover me except for any care pertaining to my pre-existing condition, I was thrilled, because I was at the mercy of the Insurance Industry, and willing to take their crumbs. I was also grateful to my employer for advocating for me.

Besides the emotional and psychological toll on a person who’s been rejected for a health insurance policy, here’s what this means for me in practical terms, now that I’m a middle-aged adult with this particular pre-existing condition. People with XLH have several health issues, mostly related to the bones, teeth, and kidneys. These issues include:

Tooth loss. Not covered. It’s already not covered, because it’s a dental issue and health insurance companies don’t see dental issues as health issues, even if your disease causes you to lose your teeth. So, those implants or that nice shiny porcelain in our mouths? We pay for those, if we can, unless we have some amazing dental insurance or a family member who’s a dentist.

Arthritis, joint pain, spinal pain, hip pain, knee pain, etc. Pretty much wherever there’s a bone, there’s pain. I suppose a doctor could prescribe pain medication, but it would not be covered because it is due to a pre-existing condition. In fact, seeing a pain specialist or a family doctor regarding this pain wouldn’t be covered, right? Remember, babies are BORN with this genetic disease. It’s not acquired in adulthood, so we experience some level of pain our entire lives. Too bad, right?

Insufficiency fractures. About 3 years ago, I was walking around with fractured feet. I didn’t know they were broken—I just thought they hurt really bad. After complaining to my endocrinologist, he recommended X-rays and well, I’ll be darned! Insufficiency fractures. My bones are weak due to an overactive hormone called FGF23 that causes me to waste phosphorous out the kidneys. Humans need phosphorous to make strong bones, but people with XLH have weak bones due to our phosphorous wasting disorder. Thus, bones can spontaneously break. I’ve been lucky, though, since only my feet have broken and not my legs, as some people with XLH have experienced. I guess those X-rays and trips to the orthopedist wouldn’t be covered by my insurance. Too bad, right? Probably those lawmakers would say it’s my own fault for walking on them. Ironically, I’m glad I can walk at all.

Kidney problems. Many people with XLH need a nephrologist to manage the possible nephrocalcinosis of their kidneys when treated for XLH. Not covered because we were born with kidneys that waste the phosphorous that is the pre-existing condition that is not covered by the health insurance.

A few other health issues include heart problems, hearing loss, and, for some, mental health issues due to the toll it can take in one’s mental health, especially children. Not covered, not covered, and definitely not covered.

So, how many specialists might someone with XLH need in their lifetime? A dentist, oral surgeon, orthopedist, ENT, endocrinologist, pain specialist, physical therapist, mental health therapist, cardiologist, and nephrologist–just to name a few. But those visits would not be covered by insurance due to our pre-existing condition.

A lot of the folks who think we should overturn the ACA and get rid of coverage for pre-existing conditions say they’re Christians. I guess their alternative plan is to pray for those who have pre-existing conditions and let the church take care of the sickest among us. Let me count the number of dentists, oral surgeons, orthopedists, ENTs, endocrinologists, pain specialists, physical therapists, mental health therapists, cardiologists, and nephrologists who are members of my little church: um … ZERO. But we do have a parish nurse (a retired RN) and she probably has connections. And since she’s my friend, I can probably get in at the front of the line. Or maybe I’ll join a larger church that will help me since my health insurance won’t. I’m sure my tithe will cover the costs.

The thing is, if we can get the affordable medical health care we need and appropriate treatments (since there is no cure), then we can actually be productive, taxpaying members of society. There is a societal benefit to receiving good health care, whether it be through socialized medicine like some countries have or health insurance coverage as we have here in the U.S. Healthy people work and pay taxes and support the economy. Since this disease isn’t going to kill me, I’d prefer to be a contributing member of society. In fact, I have been a contributing member of society since 1976 when I started working and I have been a business owner since 1990.

“Oh now,” you Christian ACA/Obamacare haters are going to say next, “we don’t want to deny you coverage, but you should at least have to pay more for your coverage if you’re ‘One of Them.’ We just don’t have the money to pay for all y’all to live quality lives. But we’ll sure keep you on our prayer list.”

Maybe that’s not what you are literally saying, but it sure feels like you believe that not everyone deserves affordable health care. Not me with my spontaneous mutation of X-chromosomes, not the preemie baby who came early through no fault of her own or her mom’s, not the woman who got tongue cancer even though she’s never smoked a cigarette in her life or touched alcohol except at holy communion, not the friend who was diagnosed with a cancer that requires cost-prohibitive medication that currently is covered by her health insurance but means she’s stuck in her job.

All these people are people I currently know and love, including myself, who right now have insurance that covers their medical conditions. But what will happen when we give back permission to health insurance companies to deny us coverage or to punish us with higher premiums just for being born?

If Christians really believe, as we claim, that we are to “be Christ” in the world, then that includes healing the sick without judgment, caring for the poor without judgment, feeding and nourishing the hungry without judgment. The church has not provided any mechanism to do this, so why not let the government do what you, The Church, will not do: heal the sick, feed the hungry, care for the poor?

Please don’t stand in its way.

Photo by Shiela G. Hunter.

About Sheila G. Hunter S. G. Hunter lives in NC and enjoys music, photography and writing when she’s not working. She blogs at WordPress under the name “Banjogrrldiaries” about living with X-Linked Hypophosphatemia.